A FAMILY has issued a desperate plea for help after their six-year-old girl was diagnosed with deadly cancer just weeks before Christmas. Lois and Craig Jackson, from Waltham Abbey, Essex, had noticed their daughter Edie’s eye turning inwards and she was squinting more often. The youngster had also complained about having double vision so they […]
A FAMILY has issued a desperate plea for help after their six-year-old girl was diagnosed with deadly cancer just weeks before Christmas.
Lois and Craig Jackson, from Waltham Abbey, Essex, had noticed their daughter Edie’s eye turning inwards and she was squinting more often.
The youngster had also complained about having double vision so they took her to see an optician who referred her to see her GP.
But the parents became so concerned that they immediately booked her in for a private appointment at an eye clinic.
Tragically, just nine days after they first noticed something was wrong, Edie was diagnosed with a brain tumour.
Following more tests at Great Ormond Street Hospital, the family were told it was an aggressive tumour called diffuse intrinsic pontine glioma (DIPG).
It affects the part of the brain stem called the pons, which controls essential bodily functions such as heartbeat, breathing, swallowing, eye movement, eyesight, and balance.
The average survival after diagnosis is only nine months and only one per cent of children diagnosed with DIPG live for longer that five years.
DIPG cannot be operated on as an attempt of surgery could cause severe neurological damage and can be fatal.
Even if surgery was possible, it would be impossible to remove the entire tumour and the remaining cells would reform.
Speaking to Essex Live, dad Craig said: “My wife, Lois and I were utterly devastated and heartbroken.
“Having to contemplate losing our beautiful little girl is something we will never ever come to terms with and is something that makes us feel numb whenever we think about it for too long.”
Despite Edie’s diagnosis, the family are determined not to give up.
We know we have the biggest fight of our lives on our hands, but we are ready to fight
Craig
Craig added: “We know we have the biggest fight of our lives on our hands, but we are ready to fight this awful disease head on and with everything we’ve got.
“We will do anything we can to save Edie and we have thrown ourselves into almost around the clock research, exploring specialists, clinics and the potential treatment options available to us.”
On December 2, Edie began a 13-day intensive treatment which is standard procedure for DIPG patients.
This treatment does have benefits as it is known to shrink some tumours, however, it is only temporary and does not increase survival chances.
Tumours almost always begin to grow again after a matter of months.
Despite how poorly Edie is, her family say she has been amazing throughout her treatment.
They added: “During her treatment, Edie has been an absolute star, so brave and strong.
“She had a custom mask made to allow accurate, consistent positioning of the head for each treatment and that helps her to remain still during treatment.
“Many children have to have general anaesthetic to have their radiotherapy masks made and to actually go through the treatment every single day.
“But not our Edie, after some initial upset, she goes in happily now and sets herself up on the bed and lays perfectly still while we read her a story via the walkie talkie.”
Across the world, there are many specialists who are constantly doing research and trails to try and find an effective treatment for DIPG.
Edie’s family are determined to do all they can to try and get Edie put on trials to try and find her a cure.
They said: “The reality is that these treatments are only trials and offer no guarantees, but we haven’t even considered not trying.”
Diffuse Intrinsic Pontine Glioma also known as ‘DIPG’ is the second most common type of primary, high-grade brain tumour in children.
DIPG tends to grow quickly and is more likely to spread to other parts of the brain or spinal cord.
They originate in an area of the brain, and more specifically the brainstem, called the pons.
The pons is an area deep within the lower part of the brain which is responsible for a number of critical bodily functions, such as breathing, sleeping and blood pressure.
The cause of brain tumours, including DIPG, is not yet known.
The signs of a DIPG vary as the pons and surrounding structures (where DIPGs are located) are responsible for a variety of different body functions.
A child with a DIPG may display:
The standard of treatment for DIPGs is radiotherapy, which is usually administered over 3 to 6 weeks depending on the type of radiotherapy that is deemed best for your child (with a daily dose given Monday to Friday).
Your child might also be given steroids during this period to help reduce some of the pressure caused by the tumour and radiation treatment.
Source: The Brain Tumour Charity
Edie’s radiotherapy ends on Wednesday, with her family now urgently trying to decide on her next step in her care.
DIPG is very unpredictable, so unfortunately a treatment that may work for one person may have a completely different effect on someone else.
Craig said: “The harsh reality is that illness and disease does not discriminate and, whilst we would trade everything we have for Edie to be OK, we are going to need some help.
“Whether we seek additional medical treatment in the UK or abroad, it will need to be privately funded and will be extremely costly.
“We could never have been prepared for this. Lois’ work situation will have to change and it has turned life upside down.”
Edie’s family has created a GoFundMe page to help raise money for future treatments and have already received more than £120,000 in donations.
